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LAURA'S STORY -
WHETHER YOU JOIN OUR 'TEAM DOUR' WALKING TEAM, JOIN THE DONATION EFFORT, ATTEND THE 2009 WALKABOUT, OR JUST LEARN ONE THING ABOUT SJOGREN'S SYNDROME, THEN THIS IS A FANTASTIC DAY!
Thanks for visiting our Team Dour Fundraising Page. ~ LAURA~
MY STORY, NOT AN UNCOMMON ONE… August 7, 2009
After having just completed my 4th week of chemotherapy and more than 10 years of misdiagnosis and frustration, I have decided to join forces with the Sjögren’s Syndrome Foundation to support the “Sjögren’s 2009 Walkabout”. I want to make sure that no other parent loses even one precious moment of time his/her children.
MY MISSION... While I have been blessed with a wonderful husband, two delightful girls, and an incredible support system of family and close friends (you know who you are, bless you), I want to do my part to aid in Sjögren’s Syndrome becoming more easily diagnosed, more effectively treated, and one day cured. Since the significance of inheritance/genetics is not yet fully understood, I want to make sure that I afford my two girls every opportunity to have their potential predisposition to autoimmune disease resolved.
Sjögren’s Syndrome can be very difficult to diagnose since it is a systemic disease but if patients and their physicians/dentists/eyecare providers work together to look at the bigger picture, the level of complication and severity may be diminished. Symptoms most often noted are severe dry eye, dry mouth, difficulty swallowing, severe inexorable dental decay, fatigue & joint pain but in cases such as mine, it is not uncommon for Sjögren’s Syndrome to also include vasculitis, pleurisy, corneal ulceration, rheumatoid arthritis, chronic fevers/pain, internal organ involvement, unfathomable complete periodontal disease requiring implants/veneers, and Lymphoma (cancer of the lymph nodes). While I am currently dealing with quite a few different disease elements to date, I really do want the focus to be on Sjogrens, as it seems to be the common link and/or instigator.
CANNOT PRONOUNCE IT? DON’T WORRY, JUST BETTER UNDERSTAND IT.
Sjögren’s Syndrome (pronounced SHOW-grins) is a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands. Today, as many as four million Americans are living with this disease. As noted earlier in addition to eyes and mouth, Sjögren’s increasingly involves other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas and central nervous system. Sjögren’s patients also have a significant higher risk of developing Lymphomas.
Sjögren’s Syndrome often is undiagnosed or misdiagnosed. The symptoms of Sjögren’s Syndrome may mimic Lupus, Rheumatoid Arthritis, Fibromyalgia and Multiple Sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, physicians, eye care providers and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. The average time from onset of symptoms to diagnosis is 6.5 years. Having had most symptoms & complications at different times and under different medical care during the last 10 years made an accurate diagnosis difficult. Since I have positive antibodies and other blood markers for other Connective Tissue diseases, a further diagnosis of Sjögren’s Syndrome was delayed until serious and damaging complications were noted.
HOPES FOR EARLY DIAGNOSIS AND PROPER TREATMENT
All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people manage their discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are crucial --- they may prevent serious complications and greatly improve a patient’s quality of life. In addition to the importance of improving diagnosis and treatment, finding the cause would prove invaluable as it would then work hand in hand with prevention.
WHY SJOGREN’S SYNDROME FOUNDATION (SSF.org)?
The Sjögren's Syndrome Foundation is a 501(c)(3) tax-exempt national voluntary health agency. Founded in 1983 the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren's syndrome. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's syndrome.
The Foundation's mission is to:
- Educate patients and their families about Sjögren's syndrome.
- Increase public and professional awareness of Sjögren's syndrome.
- Encourage research into new treatments and a cure.